Just a quick update because poesy is beyond me at this point...
Yesterday, the nurses kept saying that we could possibly go home today, and while I told Sarah that we may not get to, she was still royally pissed when she woke up and not only do we not get to go home, but we have a roommate!
Yeah, she wasn't having it. She starts crying, yelling that she doesn't want a roommate, and to get her out of here! I explain that this isn't nice, that we need to be gracious and understanding. Yeah, imagine my surprise when she so didn't care! lol
Imagine my greater surprise when the roommate's mother tells the CA, "Believe me, we feel the exact same way."
She complained about not being near the window (we have had bed 2 since we got here last Sunday, and they generally don't take Bed 2 away from the patient who had it first),she complained because the dresser wouldn't move, she gave the CA a lecture about how, with everything we have to go through, the least they could do is give us private rooms, and that they should have thought of that when they built the hospital. Um...this hospital is a very nice one, and it may have escaped her notice, but I don't think I have ever read HILTON on the side of the building! (Besides, the new tower is set to open in the spring, where every patient will have their own room!)
She engaged me shortly after in a conversation, and my momma having raised me properly, I was as cordial and polite as I could have been, despite the fact that I kinda didn't want to talk to her after what I heard in her conversation with the staff! These people, after three years, have become my friends, some of them have become like family. I don't stomach it well when they are treated like "the help". But still, as I said, my momma raised me right, and I decided to give her the benefit of the doubt. After all, I don't necessarily make the best first impression, people often mistake my initial shyness for haughtiness, and when I do start talking, not everyone appreciates my propensity for calling a spade a damn shovel. Plus, this isn't exactly an easy thing to go through, and everyone reacts in their own way.
So I talked to her, and what I found was this. They are relatively new to this, and have had it fairly easy. She seems to be fighting her fate. Being a cancer mom is kind of a birthright, a destiny. The more you fight it, the harder your life becomes. If you accept it, assume it, rock it the best way you can, even revel and take pride in it (what better badge of honor and valor could there be?) then it sort of ceases to take over your life and becomes a part of who you are. Is it always easy? Is it easy to come to a place of peace when your child is suffering on a daily basis? Hell no! Those of you who read this blog regularly know some of what I myself have struggled with, those of you who know me personally know even more. Did I want this? Heeeeeeeelllll no! But Jesus didn't want to be Savior, either. With greatness comes sacrifice. And the more you fight, the harder it is.
I never understood before now why so many people commended me, lauded me as an inspiration, a paragon of motherhood (toot toot! ha ha) when I was just doing my job. I always thought that any mother would do the same for her child and gladly. I never really saw myself as being any stronger than any of the other amazing women I have met through this experience, and because of the difficulties Sarah and I have faced, I often have seen myself as a failure. But I guess from the outside looking in, the fact that I have never seen any other choice but to accept our fate, accept our fight, and do exactly what I needed to do to get her through this as quickly and painlessly as possible seems commendable because the choice is not so easily made for everyone. Not that the result isn't the same, but acceptance isn't as easily come by for some.
My only goal has been to keep her as comfortable and as happy as I possibly can so that I can, from beginning to middle (I refuse to say end! In my mind, in my heart and my soul of souls, this can only end one way. My daughter is stubborn as hell, and she will use that to get through this! This will not be the end of her story by a long shot!) and I will continue to do so. I will continue to fight alongside my daughter. I accept my birthright. I will try to help my fellow cancer moms accept theirs if they haven't already. I will rejoice in the successes of all of our children, because we are a family. We will slay this dragon called Cancer and we will dance over its ashes. Not only will we survive, we will live.
Friday, December 7, 2012
Tuesday, December 4, 2012
Procedure Day
They took her in an hour early! She whined a little, but she went down like a champ! I'm so proud of my brave girl! One of Sarah's doctors came in and explained what we're looking for, and what could possibly happen next. Even if we see good results in the marrow, that thing on her back could be a cluster of leukemia cells and that could still be considered a relapse, so they still want to biopsy that. Antibiotics should have kicked in by now, and it really doesn't look any better, so it's doubtful that it's something small, like a clogged pore. I hate this part, the being without my daughter part, the waiting and seeing part. I can't protect her here, although I know she is in the best possible hands, at the best hospital, with the best doctors, nurses, the best child life specialist who vowed to stay with her as much for my peace of mind as for Sarah's, and the best stealth ninja anesthesiologist who gives Sarah the meds so quickly and without ceremony that she doesn't even notice! Still, the hardest thing in the world is to leave her behind, to turn away from her and walk down the hall by myself to wait in her room.
So, the thing on her back. Basically what they're telling me is that even if the bone marrow looks good, that thing on her back, could be a chloroma, also called a myeloid sarcoma, a cluster of leukemia cells. So either the bone marrow or the chloroma or both could show signs of relapse. Even if the marrow looks good, the chloroma could be a sign in and of itself that the treatment was unsuccessful. The doctor said that either way she is looking into the Interferon, to be given alone since they already gave her all of the donor cells that they had, and she just got them recently. She said there is encouraging data (that was the term she used), so I guess if we are not granted a miracle today, then there is still hope. Where there is life, there is hope. I read that in a book recently, I think it was Anne of the Island ( I know they are Youth fiction, but they are still my all time favorites, and there is something so simplistic and beautiful about the writing that it calms me, takes me back to when I was twelve and life was simple). And there is so much life left in this little girl. She is weakened, yes, but there is so much more she wants to see and do, the world at five years old is just starting to open up to her, and she means to live.
Her procedure is over now, and she is still sleeping off the last of the ketamine. It was a long night for her, and no doubt she is tired. I am trying not to think. About anything. I am going to have a sandwich. Maybe string Sarah's Beads of Courage, catch up on Once Upon a Time, read some more about Anne for the millionth time, and when the news comes, good or bad, well, then it comes. We will be ready.
So, the thing on her back. Basically what they're telling me is that even if the bone marrow looks good, that thing on her back, could be a chloroma, also called a myeloid sarcoma, a cluster of leukemia cells. So either the bone marrow or the chloroma or both could show signs of relapse. Even if the marrow looks good, the chloroma could be a sign in and of itself that the treatment was unsuccessful. The doctor said that either way she is looking into the Interferon, to be given alone since they already gave her all of the donor cells that they had, and she just got them recently. She said there is encouraging data (that was the term she used), so I guess if we are not granted a miracle today, then there is still hope. Where there is life, there is hope. I read that in a book recently, I think it was Anne of the Island ( I know they are Youth fiction, but they are still my all time favorites, and there is something so simplistic and beautiful about the writing that it calms me, takes me back to when I was twelve and life was simple). And there is so much life left in this little girl. She is weakened, yes, but there is so much more she wants to see and do, the world at five years old is just starting to open up to her, and she means to live.
Her procedure is over now, and she is still sleeping off the last of the ketamine. It was a long night for her, and no doubt she is tired. I am trying not to think. About anything. I am going to have a sandwich. Maybe string Sarah's Beads of Courage, catch up on Once Upon a Time, read some more about Anne for the millionth time, and when the news comes, good or bad, well, then it comes. We will be ready.
Fear and Faith
It has been a while since I posted last, and there is good reason. This little lady keeps me on my toes! As soon as I clean one room, she has destroyed another, and getting her back into her normal at-home routine was more difficult this time around. In other words, she threw a raging fit any time I asked her to do anything, and regressed big time, where she insisted on wearing pull-ups all the time and wouldn't tell me when she had to go. The mylotarg really wiped her out, to where she would just lay there some days and watch tv. Anyone who knows Sarah, has ever met Sarah in their lifetime, knows that this is not like her, at all. Sarah is very active and always going even when an adult would be laid out flat, and the television is background noise for her. It's constantly on (I know, but save your lectures. I'm aware of the evils of television as well as my carbon footprint.) but it's mainly to keep her company while I do my chores throughout the day. She will rarely sit through an entire program. Now that I have her almost fully trained again, where she can get through a day without a single tantrum, I have actually gotten her to turn it off while she's playing, but for her to sit there on the couch and watch program after program? She had to have been feeling awful. Her appointments were twice a week in OPI so that she could be seen by a doctor every time, and so that it was more convenient if she needed anything, which she did. EVERY.SINGLE.TIME.
She needed platelets nearly every visit, sometimes blood, too, and many overtime hours were worked because of us. Dr. Horvath gave her some supplements, all natural, to try to restore overall health, which helped to give her some energy and even opened up her appetite a little. Still, I have spent the last month or so struggling with my fear. I have never seen my daughter this way in her life. She has always been so vibrant, so full of life, and I can feel her waning. She's tired, physically and emotionally exhausted. I took her out of PT because I didn't want to waste time on something she hates doing. Her energy was at 75% to begin with. If she was going to expend energy, I wanted it to be on something she actually enjoyed. She's been so tired, so drained, that I no longer recognize my child sometimes. I know that I'm supposed to have faith, that I'm supposed to leave it up to God, and I have. But I'm a realist. I believe that God does what He wants, and there's not a thing any of us can do about it. If God wants her, He will take her, case closed. And I know I'm supposed to be okay with that. That I'm supposed to find a way to be okay with that, but how do I let go of my child? This isn't some so-called friend that wants to act dumb, or some parking ticket I can't afford. This is my daughter. How do I just say, "Oh, well, it's up to God now"? It feels too much like giving up, and I know that's wrong, which is why it's a struggle. If I was absolutely sure of what to feel one way or another, it would be easy.
And no one ever said that being faithful was easy. Never have I read anywhere that anyone who was ever tested by God wasn't scared. It only says that in the end, they believed that God would deliver them, that in they end, they followed what God told them to do. And I fully intend to do the same, but for some reason, it weirds people out that I'm afraid, to the point where they keep telling me I need to be faithful, that faith and fear don't go together. I don't necessarily agree. I think that fear is sort of a crossroads, and you can either choose to be faithful and believe that somehow things will all work out, whether you believe in a higher power or not, or you can choose to wallow and whine and be counterproductive and annoy the shit out of everyone around you. I don't think I need to tell you which path I choose, every single day, but I have walked a path of fear for a little while to get there. I mean, think about it. If I said I didn't fear for my daughter, especially at this point where we are running out of options, where she is dropping weight so dramatically that last year's clothes don't fit, you would either think me in denial, or cold and unfeeling. And I am not the type of person who suppresses anything. I need to ride the wave of fear in order to get over it. I spent an entire day crying in front of Sarah's dresser, because the sight of a dresser full of clothes that were falling off of her was just too sad for me to bear. And who do you talk to about something like that? So I rode it out alone, (although I did talk to another cancer mom about it the next day) and then I was able to deal with it, and move on.
I always settle in a place of faith, it's just not always a smooth, direct path. Especially when difficulties come up every day that make me wonder if she really will come through the other end of this alive. I know that one way or another, it's going to be okay, someday, but in the meantime, it's scary as hell staring into the face of the demon that aims to take your child from you, when she's all you have left.
Tomorrow is particularly difficult day, and tonight for me is filled with fear. The nurse practitioner explained that they are going to do a bone marrow aspirate and biopsy (they are taking some bone marrow out to test it) in order to see if the mylotarg she's been on has been working to control her leukemia, or if it hasn't had the desired effect. If tomorrow they find that she has less than 20% blasts in her bone marrow, they will consider this to mean that the mylotarg has been successful in controlling her leukemia, and I am unsure if they will continue with it or not. If, however, she has more than 20% blasts, that's considered a relapse, meaning the mylotarg was unsuccessful, and that we will have to try something else if we want to continue treatment, which, of course, we do. She is a little weaker now than she was, which scares me, but she is still very much present. I couldn't see discontinuing her treatment now.
If the mylotarg wasn't successful, her doctor wants to try a drug called Interferon, which they use widely in the US in adults, but there is no data for it's use in children, except for one study from one center in China. So basically, we would be spit-balling to see if this would work or not, with no data to guide our decision or predict an outcome, way off the beaten path with a map we made ourselves. SCARY AS SHIT.
Ironically, although tomorrow will be a very trying day, especially on no sleep, tonight will be even worse. I don't know what tomorrow's biopsy will show, and that is scarier than knowing whether it worked or it didn't. There is a lot riding on this, after all. And I know, I need to trust. I need to have faith. I need to believe the way that Sarah believes in me when I tell her that everything is going to turn out just fine. I mean, shit, while I'm a nervous wreck over here pouring out my heart to strangers to keep from going insane, my daughter is eating a taco and laughing at a short film on water birds that happens to be one of the special features on her Rescuers DVD, fully aware of the fact that she has a procedure tomorrow. She's not afraid, because to her, as far as she knows, it's just another procedure to add to the list of many, another bead on her Beads of Courage string, another annoying task that gets in the way of her busy playtime schedule. She knows that after that, she'll play for awhile, and the biggest thing she's worrying about right now is that we didn't bring anything pretty to wear to the "Christmas party" they are throwing in the playroom tomorrow evening. I need to take a lesson from my child. She is faced with all of this, and it's all normal to her, routine, and while she has been fretting over it a little more recently, it is still not nearly as much as full grown adult would. All of these kids are so amazing. For everything they can't do, there is so much more that they can. God knew what he was doing when he made this little girl as strong and as stubborn and as sassy as she is. God knew what he was doing when he made her so sweet and loveable that even strangers love her and follow her progress, that she has people who don't pray praying on her behalf. I can have faith in my daughter that God made her strong enough to withstand more than most adults could already, and she isn't done fighting yet. I can have faith in Sarah. I can believe in Sarah. And I do.
She needed platelets nearly every visit, sometimes blood, too, and many overtime hours were worked because of us. Dr. Horvath gave her some supplements, all natural, to try to restore overall health, which helped to give her some energy and even opened up her appetite a little. Still, I have spent the last month or so struggling with my fear. I have never seen my daughter this way in her life. She has always been so vibrant, so full of life, and I can feel her waning. She's tired, physically and emotionally exhausted. I took her out of PT because I didn't want to waste time on something she hates doing. Her energy was at 75% to begin with. If she was going to expend energy, I wanted it to be on something she actually enjoyed. She's been so tired, so drained, that I no longer recognize my child sometimes. I know that I'm supposed to have faith, that I'm supposed to leave it up to God, and I have. But I'm a realist. I believe that God does what He wants, and there's not a thing any of us can do about it. If God wants her, He will take her, case closed. And I know I'm supposed to be okay with that. That I'm supposed to find a way to be okay with that, but how do I let go of my child? This isn't some so-called friend that wants to act dumb, or some parking ticket I can't afford. This is my daughter. How do I just say, "Oh, well, it's up to God now"? It feels too much like giving up, and I know that's wrong, which is why it's a struggle. If I was absolutely sure of what to feel one way or another, it would be easy.
And no one ever said that being faithful was easy. Never have I read anywhere that anyone who was ever tested by God wasn't scared. It only says that in the end, they believed that God would deliver them, that in they end, they followed what God told them to do. And I fully intend to do the same, but for some reason, it weirds people out that I'm afraid, to the point where they keep telling me I need to be faithful, that faith and fear don't go together. I don't necessarily agree. I think that fear is sort of a crossroads, and you can either choose to be faithful and believe that somehow things will all work out, whether you believe in a higher power or not, or you can choose to wallow and whine and be counterproductive and annoy the shit out of everyone around you. I don't think I need to tell you which path I choose, every single day, but I have walked a path of fear for a little while to get there. I mean, think about it. If I said I didn't fear for my daughter, especially at this point where we are running out of options, where she is dropping weight so dramatically that last year's clothes don't fit, you would either think me in denial, or cold and unfeeling. And I am not the type of person who suppresses anything. I need to ride the wave of fear in order to get over it. I spent an entire day crying in front of Sarah's dresser, because the sight of a dresser full of clothes that were falling off of her was just too sad for me to bear. And who do you talk to about something like that? So I rode it out alone, (although I did talk to another cancer mom about it the next day) and then I was able to deal with it, and move on.
I always settle in a place of faith, it's just not always a smooth, direct path. Especially when difficulties come up every day that make me wonder if she really will come through the other end of this alive. I know that one way or another, it's going to be okay, someday, but in the meantime, it's scary as hell staring into the face of the demon that aims to take your child from you, when she's all you have left.
Tomorrow is particularly difficult day, and tonight for me is filled with fear. The nurse practitioner explained that they are going to do a bone marrow aspirate and biopsy (they are taking some bone marrow out to test it) in order to see if the mylotarg she's been on has been working to control her leukemia, or if it hasn't had the desired effect. If tomorrow they find that she has less than 20% blasts in her bone marrow, they will consider this to mean that the mylotarg has been successful in controlling her leukemia, and I am unsure if they will continue with it or not. If, however, she has more than 20% blasts, that's considered a relapse, meaning the mylotarg was unsuccessful, and that we will have to try something else if we want to continue treatment, which, of course, we do. She is a little weaker now than she was, which scares me, but she is still very much present. I couldn't see discontinuing her treatment now.
If the mylotarg wasn't successful, her doctor wants to try a drug called Interferon, which they use widely in the US in adults, but there is no data for it's use in children, except for one study from one center in China. So basically, we would be spit-balling to see if this would work or not, with no data to guide our decision or predict an outcome, way off the beaten path with a map we made ourselves. SCARY AS SHIT.
Ironically, although tomorrow will be a very trying day, especially on no sleep, tonight will be even worse. I don't know what tomorrow's biopsy will show, and that is scarier than knowing whether it worked or it didn't. There is a lot riding on this, after all. And I know, I need to trust. I need to have faith. I need to believe the way that Sarah believes in me when I tell her that everything is going to turn out just fine. I mean, shit, while I'm a nervous wreck over here pouring out my heart to strangers to keep from going insane, my daughter is eating a taco and laughing at a short film on water birds that happens to be one of the special features on her Rescuers DVD, fully aware of the fact that she has a procedure tomorrow. She's not afraid, because to her, as far as she knows, it's just another procedure to add to the list of many, another bead on her Beads of Courage string, another annoying task that gets in the way of her busy playtime schedule. She knows that after that, she'll play for awhile, and the biggest thing she's worrying about right now is that we didn't bring anything pretty to wear to the "Christmas party" they are throwing in the playroom tomorrow evening. I need to take a lesson from my child. She is faced with all of this, and it's all normal to her, routine, and while she has been fretting over it a little more recently, it is still not nearly as much as full grown adult would. All of these kids are so amazing. For everything they can't do, there is so much more that they can. God knew what he was doing when he made this little girl as strong and as stubborn and as sassy as she is. God knew what he was doing when he made her so sweet and loveable that even strangers love her and follow her progress, that she has people who don't pray praying on her behalf. I can have faith in my daughter that God made her strong enough to withstand more than most adults could already, and she isn't done fighting yet. I can have faith in Sarah. I can believe in Sarah. And I do.
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